Announcement

Collapse
No announcement yet.

riluzole - updated research

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    riluzole - updated research

    From Lee Millard on the Facebook group MND Warriors....

    The 2 or 3 months is highly misleading as it is based on the 3 original trials which only lasted 18 months. So the conclusions could only be made on that period. What about someone who has taken it for 5 years or 10 years?

    Now 20 years after the drug arrived, data has been reanalysed, along with real life experiences, and the general view is that it gives 10% extra life. So someone on it for 10 years, might get 3 years extra.

    This is not as crazy as it sounds, as for a cure we need a many 100% improvement/extension but also someone who experiences fast progression, the extension will be short, like 1 to 3 months.

    Here’s a recent paper

    https://www.thelancet.com/.../PIIS14...18)30054-1.pdf
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

    #2
    Hi Andy;

    That was always my impression but a trail on Mnd people after 10 years would be very hard to get any worthwhile statistics.

    A cure would be great but I'm surprised that after 20 years, nothing a bit better has been found and proved to work in trails.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

    Comment


      #3
      The Real World Evidence (RWE) on Riluzole has long shown better outcomes vs its clinical trial data.

      I remember posting about this before.

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Dont see any reason taking Riluzole , to give you a so called life extension of 2 to 3 months. but side effects actually giving your immune system a kicking . 1 step foward 4 back.

        Comment


          #5
          Hi Billy,

          I can understand people not taking riluzole for a couple of reasons but the vast majority of us do and don't have any perceived problems.

          It's very important that they don't start to dissolve in the mouth and throat.

          Love Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

          Comment


            #6
            Hi Terry, why is that important, please?




            Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

            Comment


              #7
              Hi Puddy,

              If riluzole dissolves on the tongue, it can cause numbness and taste unpleasant too.

              It doesn't lessen its efficacy but if the tongue is numb, it may be bitten.

              So, not as much of a medicinal importance, more of a potential yuck or ouch !!

              Oh, and it's best taken on an empty stomach - if it causes Nigel a bit of nausea, it's OK to eat a few crackers or plain biscuits with it.

              Love Ellie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Hi Puddy,

                It has lots of unpleasant things and can make you feel funny, light headed and sick. This is just my opinion but I strongly believe that many of the people that have problems with it is because it starts to dissolve. Some brands dissolve quicker that others and I was told to take it with a bit of yogurt if needed.

                What brand do you have?

                Love Terry
                TB once said that "The forum is still the best source for friendship and information."

                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                Comment


                  #9
                  Originally posted by Ellie View Post
                  Hi Puddy,

                  If riluzole dissolves on the tongue, it can cause numbness and taste unpleasant too.

                  It doesn't lessen its efficacy but if the tongue is numb, it may be bitten.

                  So, not as much of a medicinal importance, more of a potential yuck or ouch !!

                  Oh, and it's best taken on an empty stomach - if it causes Nigel a bit of nausea, it's OK to eat a few crackers or plain biscuits with it.

                  Love Ellie.
                  Originally posted by Terry View Post
                  Hi Puddy,

                  It has lots of unpleasant things and can make you feel funny, light headed and sick. This is just my opinion but I strongly believe that many of the people that have problems with it is because it starts to dissolve. Some brands dissolve quicker that others and I was told to take it with a bit of yogurt if needed.

                  What brand do you have?

                  Love Terry
                  Nige has Riluzol SUN 50mg. It may be a Spanish 'make'. Thanks both.




                  Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

                  Comment


                    #10
                    Hi Puddy,

                    Greetings from rainy England!

                    I find the SUN brand tablets have a better coating on them compared to other brands like Glentek (I don't find the Glentek brand easy to swallow before they start dissolving).

                    I hope Nigel finds the Sun tablets are ok for him to swallow easily. (For anyone unable to swallow tablets, Riluzole is also available in liquid form.)

                    How are you both in sunny Spain? Weather here in England today is rather dull - lots of non-stop rain for most of the day (typical British Summer! LOL).

                    Love and best wishes to you and Nigel,
                    Kayleigh xx
                    Last edited by Kayleigh; 14 August 2019, 19:23.

                    Comment


                      #11
                      Hi Kayleigh, same here. I've only had the Sun Pharma Rilozone once - months worth. The Rilutek is given to me mostly. I sometimes struggle with Rilutek/Glentec because they sticks behind my teeth or elsewhere in my mouth. The Sun Pharma ones never did. Hopefully our supplies after Brexit will be uninterrupted. Lynne
                      Last edited by Lynne K; 14 August 2019, 20:58.
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                      I'm staying positive and taking each day as it comes.

                      Comment


                        #12
                        Good afternoon all

                        Originally posted by Lynne K View Post
                        Hi Kayleigh, same here. I've only had the Sun Pharma Rilozone once - months worth
                        I had the Sun Pharma stuff originally and then was told I could only get the Glentek stuff.

                        I had a hunt round all the different pharmacy chains locally and none of them could provide the Sun Pharma version.

                        I have had a poke around and cannot find anywhere to buy privately.

                        My experience chimes with that above is that the latter is not very well formulated and dissolves on my tongue, if I am not careful to swallow it immediately.

                        I have no idea if it does dissolve in my mouth if it affects the efficacy.

                        Also, I have had no obvious side effects, although I was wondering if joint pain was one of those?

                        Warmly
                        Warmly


                        Andy

                        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                        "Things turn out the best for people who make the best of the way things turn out"

                        Comment


                          #13
                          Originally posted by nunhead_man View Post

                          I have no idea if it does dissolve in my mouth if it affects the efficacy.
                          In theory it could affect its absorption if the drug is designed to be absorbed through the stomach mucosa. The tongue, buccal areas (cheek) and sublingual areas are very effective absorbers but IDK what difference, if any, an acidic-loving (?? as in made for GI absorption) drug absorbed into plasma via the mouth may have - way above my pay grade

                          Originally posted by nunhead_man View Post
                          Also, I have had no obvious side effects, although I was wondering if joint pain was one of those?
                          It's not listed an "undesirable effect"....

                          Love Ellie.
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                          Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Hi Kayleigh - it's absolutely baking here! Nigel's not having any problems taking his tablets. The apitherapy (bee venom) itched like mad and he's scratched them. Now he has a 'trail' which I'm a bit worried about. I'll keep an eye on it. Funny (kind of) but we can only obtain the Riluzol from the hospital pharmacy. I went ther today to pick some up and the hospital was closed! It's a 'red' day in Spain, one of their many fiestas!! Thanks for your reply, take care, Lesley xx




                            Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

                            Comment


                              #15
                              Hi Lesley,

                              Good to hear there's no problem with Nigel swallowing the tablets. My local pharmacy doesn't usually have Riluzole in stock, but they order it for me and usually it only takes a few days to arrive from receiving the repeat prescription from my GP.

                              Sorry to hear that Nigel's skin is itchy due to the apitherapy. I think you are sensible to keep an eye on it. It might not be something that will clear up by itself and so perhaps see if Nigel's doctor can take a look. His doctor might prescribe some medication to clear up any skin infection and stop it feeling itchy.

                              No rain here today (yippee!) - it's been a good day for getting my washing dry, as it's breezy with some sunshine (but definitely not as hot as in Spain!)

                              I hope Nigel's skin stops itching soon.

                              Best wishes to you both,

                              Kayleigh x
                              Last edited by Kayleigh; 15 August 2019, 16:57.

                              Comment

                              Working...
                              X